I’ve participated thus far in three different clinical trials. None of the clinical trials involved medication, but rather different ways of testing and interacting with different types of tissue. Sometimes I’ve participated by sending the paraffin blocks of tumor cells (also called “tumor blocks”) and sometimes I’ve participated by having blood draws at various times before and after a type of treatment, other times, I’ve participated by providing information before and after rehabilitation or exercise.
Clinical trials come in very different packages and I’ve learned a lot about clinical trials in the last four (4) years to drive home the point to me that I had a lot of misconceptions about what it means to participate.
If you are an MBC patient, here are my recommendations about participation in clinical trials:
- Ask about the availability of clinical trials at all stages of treatment. You never know what is available unless you ask questions and sometimes a trial can be a better medication than what is already on the market.
- Ask about transportation and other costs you might have to pay in order to participate in a clinical trial. You, as the patient, are entitled to reimbursement of costs that are directly related to the trial.
- Ask to have the clinical trial documents translated into plain language by someone other than the clinical trial people, preferably a lawyer. If you don’t have access to a lawyer, contact me.
- Ask to have appointments and testing consolidated. If the trial requires testing at certain intervals, then there’s no point in having your medical oncologist repeat the same tests. If your regular oncologist requires bloodwork, then there is no point in having the trial repeat the same tests. Consolidate for your quality of life whenever possible.
- Be sure you understand what is necessary for the trial and what is addressing any underlying medical issues. Your insurance company will only pay for the costs of treatment outside of the trial and the pharmaceutical company will only pay for the costs of treatment required by the trial. Knowing which is which will save you a lot of headaches and paperwork.
- Find someone else participating in the trial and buddy up. If there is a support group or Facebook group, join it. Patients sharing information with each other is so important.
- Be 100% and completely honest with your medical team, trial or otherwise. Staying in a trial is important, but the results of the trial and the known side effects is important for anyone coming later, so share share share.
- Talk about your trial experience with others. We learn by others’ experiences and when we share with those around us, we all gain valuable experience.
- Consider journaling your experience, along with side effects. You’ll probably forget the details, so it’s important to document.
- Even if you’ve participated in one trial, consider another.
Trials are so important and participation is one way we can all give back to the community as a whole! As one trial waiting room designates — “heroes wait here” — those who give of their bodies, their experiences, their time for the benefit of others are heroes.